Fighting to beat my cancer one day at a time

OK, let’s be clear… 2014 was an interesting year. In short, I believe I had at least one medical appointment in every week of the year. It started with a back fracture late the year before and ended in vertigo while on a much needed vacation in sunny south Florida. The great news is that I am still NED but the bad news is that is was a ridiculously busy medical year. I am so worn by all the ups, downs, logistics, discussions, considerations, decisions, etc. My hope for the next year is for a serious reduction but alas the year is started with even more things that must be dealt with. I am tired of it and want it to stop. I doubt it will.

One of the things that is very concerning to me is the impact of all my issues on others. I pride myself in being capable and independent. All the medical stuff becomes a topic of conversation with people and then I feel like I am being a drain. People really want to hear about the stuff so I tell them but I don’t have a strong need to discuss it. I am a totally open book about it but I don’t provide details because it makes me feel better to “get it off my chest”. It doesn’t. I just try to put my head down and endure all the things that have to be done and not complain about it. I just can’t seem to get away from all these things and therefore worry that I am “net negative” in my important relationships. If that is you, I am sorry for the all the fuss!

Following are some details and hopefully not too boring.

Status: Let’s be clear that throughout these various medical things, there still appears to be no evidence of disease (NED). This is great news. Yes, I was diagnosed with skin cancer this year (see below) but the two are supposedly unrelated. To be clear, my list of post-cancer treatment maladies remain pretty much unchanged. The feeling along my left side is still pretty much gone but the pain still remains. I have diminished salivary output in my mouth making it sometimes difficult to eat dry food. My energy level is good but I still get tired more easily. I have been getting much better at taking care of my scalp so this is less of a problem as it has been in the past. My digestive system remains a mystery since the various therapies. The only thing that I believe I fully recovered from is taste; I believe I taste as I have before. I was really starting to feel like I was on the other side of this until the vertigo kicked in. Nice timing! Now I am looking at MONTHS of recovery according to the doctors.

Summary: Let me just start with sort of an index for the year. Remember, this is the list of medical things that are made complicated by being a metastatic patient. They are SIGNIFICANTLY more complicated because the doctors go through such machinations over the simplest things. Each one of these “entries” will have some information along with it. Sure, it is a bit analytical and organized but I am in the mood to present that way and the information should get out there.

Back fracture

False positive scan

MOHs

Vertigo

Back fracture: Over the holidays in 2013 I visited a local trampoline park with my youngest and her friends. It was great fun. I was preparing to perform a deft spin into the foam pit. On the last prep jump, I landed weird and felt something pop in my mid back. I did the flip as the pain started to increase. I continued in the park for the next 20 mins but there clearly was something wrong. In January, the pain was still pretty severe so I saw a doctor. An x-ray revealed the fracture but of course since I am a metastatic patient, we had to rule out tumors. So, I was scheduled for more scanning. No tumors just a fracture. Just a few more scans, visits, logistics and fun.

False positive: During my normal biyearly cancer lottery trip one of the scans revealed a spot on my lung. The doc said it was small and probably nothing. I should wait 6 weeks and we will scan again. So now I have possible lung cancer? No biggie. Hang out for a few weeks, go to more appointments. No, tumors, just a ghost. By the way, the back scan also revealed a spot in my kidney. The doctors didn’t say anything about it I just read it in the report. Note to you guys, read your scan reports at your own risk!

MOHs: I have a condition called actinic keratosis. It is basically damage over time from the sun. The physical manifestation of this is dry scaly spots and it often stops at that symptom only. This is pretty common condition for fair skinned people. In certain instances, these spots turn into small tumors which can be dangerous if left untreated. If course that is what is happening to me. There are various ways of treating the condition including freezing, topical therapy and surgery called MOHs. I have used the topical route with good success in the past but the spot that presented in 2014 was very close to the inner part of my left eye. It made it a surgical candidate. The surgery involved cutting out the spot then creating a long incision all the way down my face next to the nose in order to eliminate scarring. Pretty remarkable work by the surgeon as it appears to be healing nicely. During the course of this, 4 more spots have been uncovered. We are trying to get away with a topical solution right now because one of them is right on my upper lip and will require a pretty painful recovery. I spent about 8 weeks this week with raging sunburn looking around my mouth and chin. It was painful but made for a fun way to shock people in meetings.

Vertigo: The year ended with some odd intermittent vertigo symptoms that really felt like problems in my left ear. I assumed it was just more nonsense from the serious surgery I had there and ignored it. On the day of the Florida trip I kicked into full gear; spinning constantly, nausea, etc. The second day of the trip I was in bed sick to my stomach. The rest of the trip was attempts at relief, contacting doctors while away from home, coordinating care and planning the return. The backdrop to this was the weather was great and at least 2 people were able to enjoy their time away. I had one full meal for the week and lost all the weight I gained since completing therapy two years ago. Upon return, I needed scanning of course because of the metastatic disease and to see a serious doctor. I ended up in the very same head/neck practice that takes care of my melanoma. The scans were clean, no detected tumors. Its like a theme!

Vertigo status: I was diagnosed with vestibular neuronitis on the right side caused by a virus. This permanently destroyed some or all if the nerve and my brain now must learn to compensate. The damage is done and it will take months to fully compensate. Physical therapy is required because the brain must be retrained to handle the signal loss. I am a prisoner of this condition until my mind/body adjust. I am off meds and making slow progress even before I have had any PT. They say it will take months to recover but believe that recovery is possible.

With this as a backdrop, I have no idea what the next few months are going to be like. At the moment, I am getting by. Driving is not particularly safe. Walking takes huge mental energy and therefore can be tiring. Some everyday tasks are challenging but I see improvement now for the first time. I have every expectation that I will make a 100% recovery and do so fast. I am not going to let this have significant impact on anything but I admit that right now this is a devastating blow. Last year was very challenging both medically as well as personally and professionally as some of you are aware. This year is starting out to be an even bigger challenge because of the diagnosis adds a new wrinkle on top of all that. Fun times ahead!